NIH issues grants to medical centers towards tests for undiagnosed diseases

The National Institutes of Health (NIH) recently issued more than $42 million grants to six medical clinical sites nationwide to choose undiagnosed diseases and develop approaches to test for the conditions.

According to the NIH, the sites will evaluate and investigate medical cases involving patients who have had prolonged, undiagnosed conditions and symptoms and report the findings to the NIH's corresponding working group.

The program, which has been modeled after an earlier pilot program by the NIH, builds on a previous program at the NIH's clinical center in Bethesda, Md., that has worked to evaluate and diagnose medical conditions for patients.

"Newly developed methods for genome sequencing now provide us amazingly powerful approaches for deciphering the causes of rare undiagnosed conditions," Eric Green, the director of the National Human Genome Research Institute, said. "Along with robust clinical evaluations, genomics will play a central role in the Undiagnosed Diseases Network's mission."

Recipients include Baylor College of Medicine in Houston, Texas; Boston Children's Hospital, Brigham and Women's Hospital and Massachusetts General Hospital; Duke University in North Carolina; Stanford University in California; University of California-Los Angeles; and Vanderbilt University Medical Center in Nashville, Tenn.

While each new clinical site may vary when it comes to insurance coverage for testing and care, no patient will be turned away from participation in the program because of a lack of health insurance.

"We believe that there is a substantial unmet demand for the diagnoses of conditions that have perplexed skillful physicians," Isaac Kohane, a professor of pediatrics at Harvard Medical School and Boston Children's Hospital, said. "We want to address inquiries from physicians and patients throughout the country who require these services and, in doing so, create a 21st century model for diagnosis and treatment in this genomic and information-intensive era."

The network will only test its operating procedures in the first year, though it will gradually expand so the rate of admissions reaches 50 patients per year for each new test site by 2017.

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